Friday, August 28, 2015

surgeon: 1, infectious diseases: 0

Yeah, so I didn't have an infection beneath my sternum after all.

A half-dozen visits from the Infectious Diseases team, who eventually went up the chain to a second surgeon to convince him of their concerns, not only turned me into a ball of anxiety, they had me feeling like the prize in a tug of war with the original surgeon.

The original surgeon, Dr. Saber Al-Boernazar, believed there was no infection. The CT Scan results that supposedly showed differently were normal, he told me. Furthermore, there was no redness or discharge from the sternum wound. Finally, I had no fever.

He had me convinced until I received a visit from Dr. Geoff Taylor, who very effectively expressed his team's concern for my well-being.

When I finally met with Dr. Mullen, who would eventually re-open my sternum, I was desperate for his unbiased opinion. He confirmed he'd seen cases where infection sat under the sternum without manifesting the symptoms Dr. Al-Boernazar was looking for, so we agreed we would not take a chance: surgery was a go for as early as the next day, August 20th.

I was prepared for surgery around 1 p.m. on the 20th. I have no idea how long I was in the operating room, but when I was being transferred back to my room on the fourth floor of the Mazankowski, I thought I heard someone say nothing had been found at the sternum. But that couldn't be right; the anesthetic must be messing with my head.

Turns out I'd heard right. The potential 'pus pocket' on the CT Scan turned out to be old fluid from the original surgery. Normal stuff, just like Dr. Al-Boernazar said.

Still, it was a good thing they'd operated: my sternum had become separated after the original surgery and would never have healed properly. Dr. Mullen did a massive repair job and it's now as solid as a cage, apparently. I can confirm that despite the bigger wound and despite the staple job done on the outside, I feel much more stable than I did after the original surgery. I'll focus on that and let the rest of it go.

Because ultimately, shit - and mistakes - happen(s).

Monday, August 17, 2015

back under

Sometime between now and Saturday I'm going back into surgery. My sternum will be reopened, and, as the new surgeon has said, it won't be pretty.

Last time was rough, to say the least. This time I know what I didn't know then: I'll be asking for more pain relief before they start having me move from bed to chair and such. Of course, those exercises might not happen as quickly this time around, if what I understand about the new wound is correct.

This time, by the way, the surgery won't be on my heart. It's to clear an infection found under the sternum. Dr. Mullen says he'll likely be removing one to two millimeters of bone to get it out.

I learned of the infection last Saturday. Since then, Infectious Diseases and my last surgeon have been disagreeing about how to treat it. The decision was finally handed up the chain to Dr. Mullen, who visited me yesterday. We agreed on the plan.

I've been back at the Mazankowski since August 10. I expect I'll be here for at least a full week after this next operation. I know I won't want to go home unless I'm feeling stronger than I did last time. I want this to be my very last hospital stay for this valve and related issues.

Friday, August 7, 2015

hot air, balloons, and the ticking inside my chest

I didn't expect to feel worse when I left the hospital than when I arrived.

To cope with the discouragement that comes from that truth, I need regular reminders that my body - my heart - has been hit hard with a virtual two-by-four. It will be three months before my heart has fully adapted to and recovered from the assault.

I've been lucky in one significant way: virtually no pain, despite the separation of my sternum during the surgery. I was told to expect some tough times, but a small dose of Dilaudid once or twice the first day or two and the occasional Tylenol after that has been all I've needed to manage what has mostly been an intermittent ache.

Unsteady coloring

There were a few unlucky moments, however. The first came on Thursday, the day after surgery, when my ICU nurse saw signs that blood might be building up around my heart. She was right, but again, I got lucky: a doctor was able to drain it without sending me back to surgery. Best of all: I didn't even realize there was a problem until it was done, as my level of consciousness was poor at best.

Also on Thursday, I experienced a terrifying few minutes of delusion where I became convinced several days had passed without anyone talking to me. I had seen that kind of confusion in my dying father and now that I have experienced it for myself I feel grateful that I was there to reassure him of my protection. The nurse who explained to me that I had only been alone for five or 10 minutes seemed more amused at my predicament than sympathetic.

My left lung had collapsed during surgery, which wasn't as big a deal as it sounds considering a breathing tube was in place at the time, but it did mean that my oxygen levels were lower than anybody liked on Thursday evening, so I was connected to heated oxygen that blew so hard it forced me to work to breathe. After several hours of that I was nearly begging to have it removed, and when offered Dilaudid and a sleep aid I took them, just to escape what I was sure I wouldn't be able to endure for much longer.

I added some Tangles before coloring this time

Friday was a new day, particularly thanks to Stacey, one of the best nurses I have ever met. She is young but she is in charge, not only of herself but of her surroundings. She got me moving, even if it was just from the bed to the chair.

(You never know how much you use your chest muscles until you try to stand using only your legs. The pain of my first few attempts was intense but thankfully brief.)

I was a balloon at this point, absolutely topped up with fluid retention. My hands looked like blown-up latex gloves, and when I walked I could feel my skin stretching over my thighs. I improved quickly - my morning weigh-ins regularly confirmed two-plus kilogram losses every day - but it made blood collection difficult for the techs.

I learned a lot about this stamp just from one use

It wasn't until Saturday, I believe, that Dr. MacArthur finally told me what he found when he could finally use his own eyes to determine my condition: my aortic valve was going to be fine now that the mechanical one was in place, but the veins and vessels to my head and to my stomach have been inflamed by polychondritis.

It's my rheumatology team that will have to help me manage this now, and I sense that if we don't find a medication that gets the polychondritis to back off, my quality of life will be going down the toilet.
My first Artist Trading Card

In the meantime, I am at home. I can't drive for two months because I can't sit in front of an air bag, which, if deployed in a collision could reopen my sternum. Doesn't much matter, really, because I can barely do anything at all right now. I'm exhausted and I'm weak. I've done some coloring, some Zentangle work and even some first-time stamping with my Tombow brushes, and now I have done some writing. I am sincerely proud of these small efforts.

By the way: that ticking inside my chest? It turns out the mechanical valve makes a clock-like sound that seems quite loud when the house is quiet and I'm trying to sleep. Just one last bit of awesomeness to get used to.


Monday, July 27, 2015

my broken heart

In 36 hours Dr. Roderick MacArthur of the University of Alberta Hospital will be cutting into  - or cracking open - my chest.

I'm more than scared. I'm stunned, I'm overwhelmed, I have difficulty breathing when I think of it. My whole body seems to tremble from the inside.

But it has to be done.

This is my relapsing polychondritis story.

Polychondritis is rare. Attacks on the heart aren't unheard of, but they are rarer still.

When I experienced heart failure at the end of April - after 18 months or so of fatigue, dizziness, shortness of breath, muscle weakness, depression and more - and the leaking aortic valve was finally discovered, I heard every day from one doctor or nurse or another that I was a "mystery". Even at this nationally-renowned teaching hospital, none of them had ever seen this before.

Because I don't have heart disease, per se. In fact, the angiogram I had on July 17th showed perfectly clear arteries, which is fantastic.

I have relapsing polychondritis, an autoimmune disease that is most easily compared to rheumatoid arthritis ... except that I don't have swollen joints or daily pain.

Relapsing polychondritis attacks cartilage, usually in the ears and face. I had two episodes like that; the first was in 2011, the second in 2014. The pain was intense, but once I received steroid treatment it faded. I believe, however, that the second episode never really ended, even if the pain did. I believe it continued, targeting my heart, inflaming the aortic and mitral valves until they were unable to pump blood properly and I ended up at the U of A emergency room around 2 am on April 30, 2015.

And now, on July 29th, the aortic valve will be replaced with a mechanical one. But that won't be the end of the story, because it won't solve the polychondritis problem.

I started receiving a monthly infusion of Actemra on the 14th of July, but we won't know if it's going to help for a few months. The idea is to find something that brings the inflammation down. Actemra is a new drug and there is nothing in the medical literature to tell us how effective it will be for me, particularly considering it's a rheumatoid arthritis drug.

In the meantime, I will be taking 50mg of Prednisone for the indefinite future and I'll get some new heart bits installed.

I'll be back when I can.

Friday, July 24, 2015

javascript for n00bs


Challenge: CRAZY Face





Made using: Khan Academy Computer Science.
 

It's not a smiley face, but it's a start. I've completed five per cent of Khan Academy's free Intro to JS: Drawing and Animation course and I've learned to draw rectangles (squares), ellipses (circles), and lines. I can move them around and I can size them however I like. Hence, the appearance of CRAZY Face.

Next I learn to color. Right up my alley.

the low maintenance me

I used to want to be loved. There was a time when I craved it, in fact. Sometimes that craving would lead to desperate acts that embarrass me now when I think of them.
My partner of five years has never said he loves me, and I don't expect he ever will. I don't need him to say it, though I tell him almost every day I love him.
I stopped wanting 'romance' when the relationship before this one ended.
It was in 2003, and he was married. Our breakup hurt so much I came to wish I'd never met him. For years afterwards I would fantasize he'd change his mind and come find me, sweeping me back into the life I'd dreamed of with him.
I came to my senses eventually, and met Sean. After six years or so of singlehood, I was in a balanced place. I liked myself and was content. I still do and I still am.

I understand how this must sound. It's natural to suspect something must be wrong, to believe I'm missing something. I'm not saying my feelings won't change, but right now and for the last five years, I just haven't needed or wanted any of the verbal expressions of affection. I don't need or expect Sean to tell me what I mean to him. I know it from his actions, yes, but it's not something I even think about except in passing.

It's as though the cravings I used to endure finally flamed out, freeing me to accept what I have and what I receive.


This post was inspired by The True Secret of Writing: Connecting Life With Language, by Natalie Goldberg.